Variation in direct healthcare costs to health system by residents living in longterm care facilities: a Registry of Senior Australians study.

ObjectiveThis study aimed to examine the national variation in government-subsidised healthcare costs of residents in long-term care facilities (LTCFs) and costs differences by resident and facility characteristics.MethodsA retrospective population-based cohort study was conducted using linked national aged and healthcare data of older people (≥65years) living in 2112 LTCFs in Australia. Individuals' pharmaceutical, out-of-hospital, hospitalisation and emergency presentations direct costs were aggregated from the linked healthcare data. Average annual healthcare costs per resident were estimated using generalised linear models, adjusting for covariates. Cost estimates were compared by resident dementia status and facility characteristics (location, ownership type and size).ResultsOf the 75,142 residents examined, 70% (N=52,142) were women and 53.4% (N=40,137) were living with dementia. The average annual healthcare cost (all costs in $A) was $9233 (95% CI $9150-$9295) per resident, with hospitalisation accounting for 47.2% of the healthcare costs. Residents without dementia had higher healthcare costs ($11,097, 95% CI $10,995-$11,200) compared to those with dementia ($7561, 95% CI $7502-$7620). Residents living in for-profit LTCFs had higher adjusted average overall annual healthcare costs ($11,324, 95% CI $11,185-$11,463) compared to those living in not-for-profit ($11,017, 95% CI $10,895-$11,139) and government ($9731, 95% CI $9365-$10,099) facilities.ConclusionsThe healthcare costs incurred by residents of LTCFs varied by presence of dementia and facility ownership. The variation in costs may be associated with residents' care needs, care models and difference in quality of care across LTCFs. As hospitalisation is the biggest driver of the healthcare costs, strategies to reduce preventable hospitalisations may reduce downstream cost burden to the health system.

Examining interrater agreement between self-report and proxy-report responses for the quality of life-aged care consumers (QOL-ACC) instrument.

BACKGROUND: Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairment amongst older people, hence proxy reporting is often utilised as the default option. Internationally, there is little evidence on the impact of proxy perspective on interrater agreement between self and proxy report. OBJECTIVES: To assess the impacts of (i) cognition level and (ii) proxy perspective on interrater agreement using a utility instrument, the Quality of Life-Aged Care Consumers (QOL-ACC). METHODS: A cross-sectional study was undertaken with aged care residents and family member proxies. Residents completed the self-report QOL-ACC, while proxies completed two proxy versions: proxy-proxy perspective (their own opinion), and proxy-person perspective (how they believe the resident would respond). Interrater agreement was assessed using quadratic weighted kappas for dimension-level data and concordance correlation coefficients and Bland-Altman plots for utility scores. RESULTS: Sixty-three residents (22, no cognitive impairment; 41, mild-to-moderate cognitive impairment) and proxies participated. In the full sample and in the mild-to-moderate impairment group, the mean self-reported QOL-ACC utility score was significantly higher than the means reported by proxies, regardless of perspective (p < 0.01). Agreement with self-reported QOL-ACC utility scores was higher when proxies adopted a proxy-person perspective. CONCLUSION: Regardless of cognition level and proxy perspective, proxies tend to rate quality of life lower than residents. Further research is needed to explore the impact of such divergences for quality assessment and economic evaluation in aged care.

Child-Parent Agreement in the Assessment of Health-Related Quality of Life Using the CHU9D and the PedsQLTM.

OBJECTIVE: This study examined the inter-rater agreement between child-self and parental proxy health-related quality of life (HRQoL) ratings (overall and domain level) using two different generic child-specific measures, the Child Health Utility 9D (CHU9D) and the Pediatric Quality of Life Inventory (PedsQLTM), in a community-based sample of Australian children. A secondary objective was to investigate the impact of age on child-parent agreement across the dimensions of the two measures. METHODS: A total of 85 child-parent dyads (children aged 6-12 years) recruited from the community completed the self and proxy versions of the CHU9D and the PedsQLTM, respectively. The inter-rater agreement was estimated using Concordance Correlation Coefficients (CCC) and Gwet's Agreement Coefficient (AC1) for the overall sample and across age-groups. RESULTS: Agreement was low for overall HRQoL for both the CHU9D (CCC = 0.28) and the PedsQLTM (CCC = 0.39). Across the CHU9D dimensions, agreement was the highest for 'sad' (AC1 = 0.83) and lowest for 'tired' (AC1 = 0.31). The PedsQLTM demonstrated stronger agreement (AC1 = 0.41-0.6) for the physical health dimension but weaker for the psychosocial dimensions (AC1 < 0.4). Except for the 'tired' dimension, agreement was consistent across age-groups with the CHU9D, whilst the PedsQLTM showed poor agreement for most of the psychosocial health items among the older age-groups only (8-10 and 11-12 years). CONCLUSION: This study highlights that the agreement between child and parent proxy reported HRQoL may be influenced by both the measure used and the age of the child. These findings may have implications for the economic evaluation of healthcare interventions and services in child populations when both child and proxy perspectives are considered in the assessment of child HRQoL.

Feasibility of self-reported health related quality of life assessment with older people in residential care: insights from the application of eye tracking technology.

PURPOSE: Increasingly there are calls to routinely assess the health-related quality of life (HRQoL) of older people receiving aged care services, however the high prevalence of dementia and cognitive impairment remains a challenge to implementation. Eye-tracking technology facilitates detailed assessment of engagement and comprehension of visual stimuli, and may be useful in flagging individuals and populations who cannot reliably self-complete HRQoL instruments. The aim of this study was to apply eye-tracking technology to provide insights into self-reporting of HRQoL among older people in residential care with and without cognitive impairment. METHODS: Residents (n = 41), recruited based on one of three cognition subgroups (no, mild, or moderate cognitive impairment), completed the EQ-5D-5L on a computer with eye tracking technology embedded. Number and length of fixations (i.e., eye gaze in seconds) for key components of the EQ-5D-5L descriptive system were calculated. RESULTS: For all dimensions, participants with no cognitive impairment fixated for longer on the Area of Interest (AOI) for the response option they finally chose, relative to those with mild or moderate cognitive impairment. Participants with cognitive impairment followed similar fixation patterns to those without. There was some evidence that participants with cognitive impairment took longer to complete and spent relatively less time attending to the relevant AOIs, but these differences did not reach statistical significance generally. CONCLUSIONS: This exploratory study applying eye tracking technology provides novel insights and evidence of the feasibility of self-reported HRQoL assessments in older people in aged care settings where cognitive impairment and dementia are highly prevalent.

Valuing the Quality-of-Life Aged Care Consumers (QOL-ACC) Instrument for Quality Assessment and Economic Evaluation.

OBJECTIVE: This paper reports on the valuation of the classification system for the Quality-of-Life Aged Care Consumers (QOL-ACC) instrument using a discrete choice experiment (DCE) with duration with a large sample of older people receiving aged care services. METHODS: A DCE with 160 choice sets of two quality-of-life state-survival duration combinations blocked into 20 survey versions, with eight choice sets in each version, was designed and administered through an on-line survey to older Australians receiving aged care services in home and via interviewer facilitation with older people in residential aged care settings. Model specifications investigating preferences with respect to survival duration and interactions between QOL-ACC dimension levels were estimated. Utility weights were developed, with estimated coefficients transformed to the 0 (being dead) to 1 (full health) scale to generate a value set suitable for application in quality assessment and for the calculation of quality-adjusted life-years for use in economic evaluation. RESULTS: In total, 953 older people completed the choice experiment with valid responses. The estimation results from econometric model specifications indicated that utility increased with survival duration and decreased according to quality-of-life impairment levels. An Australian value set (range - 0.56 to 1.00) was generated for the calculation of utilities for all QOL-ACC states. CONCLUSION: The QOL-ACC is unique in its focus on measuring and valuing quality of life from the perspective of older people themselves, thereby ensuring that the preferences of aged care service users are the primary focus for quality assessment and economic evaluation.

Psychometric Evaluation of Glaucoma Quality of Life Item Banks (GlauCAT) and Initial Assessment Using Computerized Adaptive Testing.

Purpose: To evaluate the psychometric properties of glaucoma-specific quality of life (QoL) item banks (GlauCAT) and assess their performance using computerized adaptive testing (CAT) simulations. Methods: In this cross-sectional study, 293 participants with glaucoma (mean age ± SD, 70.7 ± 13.2 years; 45% female) answered 342 items in 12 QoL item banks (IBs): Activity Limitation (AL); Driving (DV); Convenience (CV); Economic (EC); Emotional (EM); General Symptoms (GS); Health Concerns (HC); Lighting (LT); Mobility (MB); Ocular Surface Symptoms (OS); Social (SC); and Visual Symptoms (VS). These IBs were assessed using Rasch analysis, and CAT simulations with 1000 simulated respondents were utilized to determine the average number of items to be administered to achieve moderate and high precision levels. Results: The AL, DV, EM, HC, LT, MB, EC, OS, SC, and VS IBs required relatively minor amendments to achieve satisfactory psychometric fit. To resolve multidimensionality, we split CV into Treatment Convenience (TCV) and General Convenience (GCV). Due to poor measurement precision, the GS IB was not pursued further. This resulted in 12 total IBs. In CAT simulations, an average of 3.7 and 7.3 items per IB were required to attain measurement at moderate and high precision, respectively. Conclusions: Following rigorous psychometric assessment, we developed 12 valid glaucoma-specific QoL domains that can obtain highly precise person measure estimates using a small number of items. Translational Relevance: GlauCAT will enable researchers and clinicians to quickly and comprehensively assess the impact of glaucoma and its associated interventions across a range of QoL domains.

Do we agree or disagree? A systematic review of the application of preference-based instruments in self and proxy reporting of quality of life in older people.

PURPOSE: Quality of life is an important person-centred outcome in health and aged care settings. Due to an increasing prevalence of cognitive decline and dementia in ageing populations, a proportion of older people receiving health and aged care services may not be able to reliably assess their own quality of life, highlighting the need for proxy assessment. This systematic review sought to investigate the level of agreement between self and proxy-report of older people's quality of life using established preference-based instruments of quality of life suitable for economic evaluation. METHODS: A systematic review was conducted following PRISMA guidelines. Eight databases were searched: Web of Science, Scopus, Medline, Econlit, PsychINFO, CINAHL, Ageline and Cochrane Library. Information was extracted on the instruments, population samples (including any cognitive thresholds applied), mean scores, type of proxy, and measures of inter-rater agreement. RESULTS: A total of 50 studies using eight different preference-based quality of life instruments were identified. Most studies were cross-sectional (72%) with a wide variety of cognitive assessments and thresholds applied to define older participants with cognitive impairment. The most common proxies were family members, mostly spouses. The level of agreement between self and proxy-report was generally poor - irrespective of the instrument applied or type of proxy - with proxy-report generally indicating lower levels of quality of life than self-report. There was some evidence of stronger agreement on more observable quality of life domains e.g., physical health and mobility, relative to less observable domains e.g. emotional well-being. Few studies tracked self and/or proxy-report of quality of life longitudinally. CONCLUSIONS: More research is needed to develop evidence to inform guidance on self-report versus proxy-report of quality of life for older people receiving health and aged care services. Until then, the collection of both self and proxy reports as complementary measures is indicated.

The integration of mixed methods data to develop the quality of life - aged care consumers (QOL-ACC) instrument.

BACKGROUND: This paper describes the collection and integration of mixed methods data to facilitate the final selection of items for the Quality of Life - Aged Care Consumers (QOL-ACC) instrument. The aim of the wider project is to develop a preference-based quality of life instrument that can be used for quality assessment and economic evaluation. Older people have been involved at every stage of the development of the QOL-ACC to ensure that the final instrument captures their perspectives and preferences. METHODS: Mixed methods data was collected on draft items for the QOL-ACC instrument across six key quality of life dimensions (mobility, pain management, emotional well-being, independence, social connections, and activities). Qualitative face validity data was collected from older people (aged 66 to 100 years) living in the community and in residential aged care via semi-structured interviews (n = 59). Quantitative data was collected from older people (aged 65 to 91 years) receiving aged care services in the community via an online survey (n = 313). A traffic light pictorial approach was adopted as a practical and systematic way to categorise and present data in a meaningful way that was easy for non-academic workshop members to understand and to be able to discuss the relative merits of each draft item. RESULTS: The traffic light approach supported the involvement of consumer and aged care provider representatives in the selection of the final items. Six items were selected for the QOL-ACC instrument with one item representing each of the six dimensions. CONCLUSIONS: This methodological approach has ensured that the final instrument is psychometrically robust as well as meaningful, relevant and acceptable to aged care consumers and providers.

Prevalence of Eye Conditions, Utilization of Eye Health Care Services, and Ophthalmic Medications After Entering Residential Aged Care in Australia.

Purpose: This study aims to evaluate the burden and trends of eye diseases, utilisation of eye health care services, and ophthalmic medications among older people living in residential aged care facilities in Australia. Methods: A cross-sectional study was conducted using data from the Registry of Senior Australians. Individuals aged ≥65 years who entered permanent residential aged care facilities between 2008 and 2015 were included. The prevalence (95% confidence interval [CI]) of eye diseases by year, eye health care services, and ophthalmic medication use within a year of entry into the service were evaluated. Poisson regression models estimated adjusted rate of change using prevalence ratio (PR) by age, sex, state, and frailty scores. Results: Of the 409,186 people studied, 43.6% (N = 178,367) had an eye condition. Of the total cohort, 32.9% (N = 134,566) had chronic eye conditions and 19.7% (N = 80,661) had an acute eye condition. Common chronic eye conditions were glaucoma (13.6%, N = 55,830), cataract (8%, (N = 32,779), blindness (4.5%, N = 18,856), and poor vision (10.3%, N = 42,245). Prevalence of any eye condition (2008: 42.7%, 95% CI = 42.2%-43.2% and 2015: 41.2%, 95% CI = 40.8-41.6%, PR = 0.99, 95% CI = 0.99-0.99, P < 0.001), acute eye conditions (2008: 19.8%, 95% CI = 19.4%-20.2% and 2015: 17.4%, 95% CI = 17.1%-17.6%, PR = 0.97, 95% CI = 0.97-0.98, P < 0.001), and blindness (2008: 5.2%, 95% CI = 5.0%-5.4% and 2015: 3.7%, 95% CI = 3.5%-3.9%, PR = 0.93, 95% CI = 0.93-0.94, p < 0.001). decreased over the study period. The prevalence of glaucoma (2008: 13.5%, 95% CI = 13.2%-13.8% and 2015: 13.8%, 95% CI = 13.5%-13.7%; PR = 1.01, 95% CI = 0.99-1.10, P < 0.001) and cataract (2008: 7.4%, 95% CI = 7.2%-7.7% and 2015: 8.5%, 95% CI = 8.3%-8.7%, PR = 1.00, 95% CI = 1.00-1.01, P < 0.001) remained stable or slightly increased. Overall, 46.4% (N = 82,769) of individuals with eye conditions, accessed at least one eye health service within the first year of entering residential care and 70.5% (N = 125,673) used at least one ophthalmic medication. Optometric services (41.7%, N = 74,358) were the most used eye health care services and anti-infective eye drops (37.2%, N = 66,331) were the most commonly dispensed medications. Conclusions: The prevalence of blindness among older Australian using residential aged care services decreased over the study period. However, the burden of eye diseases remained high between 2008 and 2015, whereas the use of eye health care services was disproportionately low. This study provides evidence of a significant need for eye health care services for older people with an eye disease in residential aged care facilities. Translational Relevance: Four in ten long term aged care residents in Australia had at least one eye condition over the study period, indicating potential for a high eye health care needs in aged care settings.

A preference for quality: Australian general public's willingness to pay for home and residential aged care.

In Australia and many other countries internationally, aged care services are provided to older people in their own homes or residential care facilities. The majority of these services are funded by the federal government using taxpayer contributions from the general public. However, the monetary value Australians place on aged care services, and the factors that predict this value, have not been examined. We, therefore, sought to determine the general public's willingness to pay (WTP) for aged care services and examine which factors influence this WTP. A cross-sectional contingent valuation survey was administered to a nationally representative cohort of 10,285 Australians between September and October 2020 from the general population aged 18 years and over. Respondents were asked to indicate their WTP values for satisfactory and high-quality aged care services to be provided in the future. A two-part regression model was used to explain what factors explained variation in WTP. In total, 80% (61%) of respondents were willing to pay to access satisfactory (high) quality home care (counterpart figures for residential care were 64% (45%)). On average, respondents were willing to pay between $126 and $158 ($145 and $237) per week to receive satisfactory-quality (high-quality) home care and between $333 and $520 ($308 and $680) per week for satisfactory-quality (high-quality) residential care. Respondents were willing to pay an additional $120 per week on average to access high-quality aged care. Higher WTP values were generally associated with being younger, male, recent experience with aged care through a close family member accessing aged care and ability to pay. These results suggest general public support for payment of individual co-contributions to access aged care services in the future.

Psychometric Assessment of the Chinese Version of the Indian Vision Functioning Questionnaire Based on the Method of Successive Dichotomizations.

Purpose: The purpose of this study was to assess whether a Chinese translated version of the 33-item Indian Vision Function Questionnaire (IND-VFQ-33) forms a valid measurement scale and to evaluate its psychometric properties based on the method of successive dichotomizations (MSD). Methods: The English version of the IND-VFQ-33 was translated, back translated, and cross-culturally adapted for use in China. It was interviewer administered to patients with cataracts. MSD, a polytomous Rasch model that estimates ordered thresholds, was used to assess and optimize psychometric properties of the overall scale and three subscales separately. Results: One hundred and seventy-nine patients provided complete responses. After the removal of 2 misfitting items, a revised 31-item overall scale demonstrated adequate precision (person reliability [PR] = 0.92) and no misfitting items. The general functioning subscale fit the MSD model well after removing two misfitting items. The psychosocial impact subscale and the visual symptoms subscale were not considered further due to poor measurement precision. After addressing psychometric deficiencies, a 31-item overall scale (IND-VFQ-31-CN) and a 19-item general functioning subscale (IND-VFQ-GF-19-CN) were developed. Conclusions: The original IND-VFQ-33 required re-engineering to form valid measures for use in China. The revised overall scale and general functioning subscale demonstrated adequate MSD based psychometric properties. Translational Relevance: The revised IND-VFQ-33 is a valid patient-reported outcome assessment for Chinese patients with cataract based on MSD analysis.

Utilisation of general practice health assessments around an aged care assessment is associated with lower mortality risk in older Australians.

OBJECTIVE: (i) to describe the general practitioner utilisation of health assessments, management plans, coordination of team care arrangements and medication review item numbers within 6 months of an aged care eligibility assessment for home care packages (HCP) and (ii) investigate the impact of health assessments on the risk of mortality and entry into permanent residential aged care (PRAC) of individuals accessing HCP. DESIGN AND SETTING: retrospective cohort study utilising data from the Registry of Senior Australians (ROSA) was conducted. SUBJECTS: 75,172 individuals aged ≥75 years who received HCP between 2011 and 2015. OUTCOME MEASURE: for objective 1: the use of comprehensive assessments (Medicare Benefits Schedule (MBS) items 705 or 707), management plans (MBS 721), coordination of team care arrangements (MBS 723), and medication reviews (MBS 900). For objective 2: time to death and entry into PRAC. RESULTS: of the 75,172 individuals, 28.2% (95% confidence interval (CI): 27.8-8.5%) had comprehensive assessments, 36.7% (95% CI: 36.3-37.0%) had management plans, 33.0% (95% CI: 32.7-33.3%) received coordination of team care arrangements and 5.4% (95% CI: 5.2-5.5%) had medication reviews. Individuals with a comprehensive assessment had a 5% lower risk of mortality (adjusted hazard ratio (aHR), 95% CI = 0.95, 0.92-0.98) but 5% higher risk of transition to PRAC (adjusted subdistribution HRs, 95% CI = 1.05, 1.02-1.08) compared to those who did not have these services. CONCLUSION: the utilisation of health assessments was associated with a lower risk of mortality. There is an opportunity for increased use of item numbers in frailer individuals.

Developing dimensions for a new preference-based quality of life instrument for older people receiving aged care services in the community.

PURPOSE: To identify the salient quality of life characteristics relevant to older people in receipt of community aged care services in order to develop dimensions for a draft descriptive system for a new preference-based quality of life instrument. METHODS: Forty-one in-depth semi-structured interviews were undertaken with older people (65 years and over) receiving community aged care services across three Australian states to explore quality of life characteristics of importance to them. The data were analysed using framework analysis to extract broader themes which were organised into a conceptual framework. The data were then summarised into a thematic chart to develop a framework matrix which was used to interpret and synthesise the data. Care was taken throughout to retain the language that older people had adopted during the interviews to ensure that appropriate language was used when identifying and developing the quality of life dimensions. RESULTS: The analysis resulted in the identification of five salient quality of life dimensions: independence, social connections, emotional well-being, mobility, and activities. CONCLUSION: This research finds that quality of life for older people accessing aged care services goes beyond health-related quality of life and incorporates broader aspects that transcend health. The findings represent the first stage in a multiphase project working in partnership with older people to develop a new preference-based instrument of quality of life for informing quality assessment and economic evaluation in community aged care. In future work, draft items will be developed from these dimensions and tested in face validity interviews before progressing to further psychometric testing.

Development and validation of a frailty index based on Australian Aged Care Assessment Program data.

OBJECTIVES: To develop and validate a frailty index, derived from aged care eligibility assessment data. DESIGN: Retrospective cohort study; analysis of the historical national cohort of the Registry of Senior Australians (ROSA). PARTICIPANTS: 903 996 non-Indigenous Australians aged 65 years or more, living in the community and assessed for subsidised aged care eligibility during 2003-2013. MAIN OUTCOME MEASURES: 44-item frailty index; summary statistics for frailty index score distribution; predictive validity with respect to mortality and entry into permanent residential aged care during the five years after assessment. RESULTS: The mean frailty index score during 2003-2013 was 0.20 (SD, 0.07; range, 0-0.41); the proportion of assessed older people with scores exceeding 0.20 increased from 32.1% in 2003-2005 to 75.0% in 2012-2013. The risks of death and entry into permanent residential aged care at one, three and five years increased with frailty index score level (at one year, high [over 0.35] v low scores [under 0.05]: hazard ratio for death, 5.99; 95% CI, 5.69-6.31; for entry into permanent residential aged care, 8.70; 95% CI, 8.32-9.11). The predictive validity (area under the receiver operating characteristic curve) of Cox proportional hazard models including age, sex, and frailty index score was 0.64 (95% CI, 0.63-0.64) for death and 0.63 (95% CI, 0.62-0.63) for entry into permanent residential aged care within one year of assessment. CONCLUSIONS: We used Australian aged care eligibility assessment program data to construct and validate a frailty index. It can be employed in aged care research in Australia, but its application to aged care planning requires further investigation.

Computerized Adaptive Tests: Efficient and Precise Assessment of the Patient-Centered Impact of Diabetic Retinopathy.

Purpose: Evaluate efficiency, precision, and validity of RetCAT, which comprises ten diabetic retinopathy (DR) quality of life (QoL) computerized adaptive tests (CATs). Methods: In this cross-sectional clinical study, 183 English and/or Mandarin-speaking participants with DR (mean age ± standard deviation [SD] 56.4 ± 11.9 years; 38% proliferative DR [worse eye]) were recruited from retinal clinics in Singapore. Participants answered the RetCAT tests (Symptoms, Activity Limitation, Mobility, Emotional, Health Concerns, Social, Convenience, Economic, Driving, and Lighting), which were capped at seven items each, and other questionnaires, and underwent eye tests. Our primary evaluation focused on RetCAT efficiency (i.e. standard error of measurement [SEM] ± SD achieved and time needed to complete each CAT). Secondary evaluations included an assessment of RetCAT's test precision and validity. Results: Mean SEM across all RetCAT tests was 0.351, ranging from 0.272 ± 0.130 for Economic to 0.484 ± 0.130 for Emotional. Four tests (Mobility, Social, Convenience, and Driving) had a high level of measurement error. The median time to take each RetCAT test was 1.79 minutes, ranging from 1.12 (IQR [interquartile range] 1.63) for Driving to 3.28 (IQR 2.52) for Activity Limitation. Test precision was highest for participants at the most impaired end of the spectrum. Most RetCAT tests displayed expected correlations with other scales (convergent/divergent validity) and were sensitive to DR and/or vision impairment severity levels (criterion validity). Conclusions: RetCAT can provide efficient, precise, and valid measurement of DR-related QoL impact. Future application of RetCAT will employ a stopping rule based on SE rather than number of items to ensure that all tests can detect meaningful differences in person abilities. Responsiveness of RetCAT to treatment interventions must also be determined. Translational Relevance: RetCAT may be useful for measuring the patient-centered impact of DR severity and disease progression and evaluating the effectiveness of new therapies.

Mind the (inter-rater) gap. An investigation of self-reported versus proxy-reported assessments in the derivation of childhood utility values for economic evaluation: A systematic review.

PURPOSE: Evidence surrounding utilities for health states, derived either directly from the application of preference-based valuation methods or indirectly from the application of preference-based quality of life instruments, is increasingly being utilised to inform the cost-effectiveness of child health interventions. Proxy (parent or health professional) assessments are common in this area. This study sought to investigate the degree of convergence in childhood utilities generated directly or indirectly within dyad child and proxy assessments. METHODS: A systematic literature review was conducted following PRISMA guidelines. A comprehensive literature search strategy conducted across six search engines (PubMed, Embase, Web of Science, PsychoINFO, EconLit, CINAHL and Cochrane Library). Original peer-reviewed articles that reported utilities derived directly or indirectly using simultaneous dyad child and proxy assessments were extracted. Mean and median utilities, correlation coefficients and levels of agreement were extracted, catalogued and assessed. RESULTS: A total of 35 studies that reported utilities for two or more respondent types were identified. Of these, 29 studies reported dyad childhood self-report and proxy utilities whilst six studies reported levels of agreement and/or correlations only without documenting overall utilities. Proxy assessment was most often conducted by parents with the HUI3 representing the most commonly applied instrument across a range of health conditions. The utilities derived from child and parent proxy assessment were bidirectional with parental proxies tending to underestimate and health professional proxies tending to overestimate relative to child self-reports. Inter-rater agreement between child self-reports and parent-proxy reports were poorer for more subjective attributes (cognition, emotion and pain), relative to physical attributes (mobility, self-care, speech, vision) of health-related quality of life. CONCLUSIONS: Childhood utilities derived from children or proxies are not interchangeable. The choice of self or proxy assessor may have potentially significant implications for economic evaluations of child health interventions.

A Review of the Development and Application of Generic Preference-Based Instruments with the Older Population.

Older people (aged 65 years and over) are the fastest growing age cohort in the majority of developed countries, and the proportion of individuals defined as the oldest old (aged 80 years and over) living with physical frailty and cognitive impairment is rising. These population changes put increasing pressure on health and aged care services, thus it is important to assess the cost effectiveness of interventions targeted for older people across health and aged care sectors to identify interventions with the strongest capacity to enhance older peoples' quality of life and provide value for money. Cost-utility analysis (CUA) is a form of economic evaluation that typically uses preference-based instruments to measure and value health-related quality of life for the calculation of quality-adjusted life-years (QALYS) to enable comparisons of the cost effectiveness of different interventions. A variety of generic preference-based instruments have been used to measure older people's quality of life, including the Adult Social Care Outcomes Toolkit (ASCOT); Health Utility Index Mark 2 (HUI2); Health Utility Index Mark 3 (HUI3); Short-Form-6 Dimensions (SF-6D); Assessment of Quality of Life-6 dimensions (AQoL-6D); Assessment of Quality of Life-8 dimensions (AQoL-8D); Quality of Wellbeing Scale-Self-Administered (QWB-SA); 15 Dimensions (15D); EuroQol-5 dimensions (EQ-5D); and an older person specific preference-based instrument-the Investigating Choice Experiments Capability Measure for older people (ICECAP-O). This article reviews the development and application of these instruments within the older population and discusses the issues surrounding their use with this population. Areas for further research relating to the development and application of generic preference-based instruments with populations of older people are also highlighted.

Development and Psychometric Assessment of Novel Item Banks for Hereditary Retinal Diseases.

SIGNIFICANCE: This study develops psychometrically valid item banks across 10 areas of quality of life (QoL) specific to people with hereditary retinal diseases, which will enable clinicians and researchers to explore the impact of hereditary retinal diseases across all aspects of QoL. PURPOSE: The purpose of this study was to assess the psychometric properties of hereditary retinal disease QoL item banks using Rasch analysis and demonstrate the effectiveness of a computerized adaptive testing (CAT) system in obtaining precise measurement of QoL using only a few items. METHODS: The hereditary retinal disease item banks were answered by 233 participants (median age, 58 years; range, 18 to 94 years; female participants, 59%). The hereditary retinal disease item banks cover 10 QoL domains: activity limitation, mobility, emotional, social, convenience, economic, health concerns, visual symptoms, ocular comfort symptoms, and general symptoms. Rasch analysis assessed the psychometric properties of the 10 item banks and provided item calibrations for the development of CAT. Computerized adaptive testing simulations were performed to calculate the average number of items required to gain precise measurement of each QoL domain. RESULTS: The convenience, economic, visual symptoms, and the social domains formed unidimensional scales. However, the activity limitation and health concerns domains demonstrated multidimensionality and required major modifications to resolve this, which resulted in four new QoL domains, namely, reading, driving, lighting, and concerns about the disease progression. In total, 10 item banks underwent CAT simulation testing, which indicated that 8 to 12 items were required to gain precise measurement of each QoL domain. CONCLUSIONS: We have developed 10 psychometrically valid item banks to measure the QoL domains relevant to people with hereditary retinal diseases. On average, only 5 and 10 items were required to gain measurement at moderate and high precision, respectively.

Patient-reported Outcomes for Assessment of Quality of Life in Refractive Error: A Systematic Review.

SIGNIFICANCE: This review has identified the best existing patient-reported outcome (PRO) instruments in refractive error. The article highlights the limitations of the existing instruments and discusses the way forward. PURPOSE: A systematic review was conducted to identify the types of PROs used in refractive error, to determine the quality of the existing PRO instruments in terms of their psychometric properties, and to determine the limitations in the content of the existing PRO instruments. METHODS: Articles describing a PRO instrument measuring 1 or more domains of quality of life in people with refractive error were identified by electronic searches on the MEDLINE, PubMed, Scopus, Web of Science, and Cochrane databases. The information on content development, psychometric properties, validity, reliability, and responsiveness of those PRO instruments was extracted from the selected articles. The analysis was done based on a comprehensive set of assessment criteria. RESULTS: One hundred forty-eight articles describing 47 PRO instruments in refractive error were included in the review. Most of the articles (99 [66.9%]) used refractive error-specific PRO instruments. The PRO instruments comprised 19 refractive, 12 vision but nonrefractive, and 16 generic PRO instruments. Only 17 PRO instruments were validated in refractive error populations; six of them were developed using Rasch analysis. None of the PRO instruments has items across all domains of quality of life. The Quality of Life Impact of Refractive Correction, the Quality of Vision, and the Contact Lens Impact on Quality of Life have comparatively better quality with some limitations, compared with the other PRO instruments. CONCLUSIONS: This review describes the PRO instruments and informs the choice of an appropriate measure in refractive error. We identified need of a comprehensive and scientifically robust refractive error-specific PRO instrument. Item banking and computer-adaptive testing system can be the way to provide such an instrument.